I’m loving … Wren’s Memorial Day post

I was looking for inspiration on what to post to honour this Memorial Day, hoping something in my reader would create some kind of spark.

Then I hit Wren’s offering.

And I quit looking because that’s about as eloquent as it gets. So, if you haven’t already, head over to RheumaBlog to read Wren’s take on Memorial Day.

(Sorry about the lack of links; I’m posting this from my phone. I’ll fix it later. Promise.)

UPDATED 2 June 2011 at 12:37 a.m.): And we’re fixed!

 

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Walk to Cure Psoriasis

I’m going to go out on a limb and say that pretty much everyone who reads this blog either has an autoimmune disease or knows someone who does (or has stumbled upon it because I often use song lyrics for blog titles. Oops.). That means we all know the effect arthritis or lupus or AS can have on people we care about, and most of us know how expensive and exhausting it can be just to feel normal. We know how many pills and shots and infusions we need to sometimes just tread water. And I think we can all agree that the most important thing would be a cure for all of these autoimmune diseases.

And—at least in my case—that’s why we walk. We pull our protesting bodies out of bed too early on a Saturday morning to walk 5K. We harass ask our friends and families for funds. We write letters to the editor trying to raise community awareness.

Which brings me to my point: I am walking in the 9 April Raleigh, N.C., Walk to Cure Psoriasis. I would love to have more support. Here’s the email I sent out to friends and family:

Dear friend,

I am asking for your help with a cause that means a lot to me: improving the lives of people with psoriasis and psoriatic arthritis.  In my efforts to make a difference, I am participating in the Walk to Cure Psoriasis.

I believe most people would be surprised and saddened by the impact of the disease and the lack of awareness about how difficult it is to live with. Psoriasis is more than a simple skin rash.  It often can encompass major areas of the body and can even become debilitating.

As many as 30 percent of people who have psoriasis will also develop psoriatic arthritis, which is a very painful and potentially crippling form of arthritis.  In addition to the skin condition, they have to deal with intense joint pain, swelling and other symptoms that limit their ability to carry out the routines of daily life.

More than 7.5 million Americans have psoriasis, yet very little is being invested in public education or research for a cure.  I am asking for your help.  Through the Walk to Cure Psoriasis, we will bring in money to help find a cure and create public awareness about the disease.

Please support me by donating online or joining me on my walk.  Your help is greatly appreciated.

Or, join in at a walk near you!

pampered

Is it Saturday, yet?

This weekend will be the first one in awhile that I haven’t had to work. Conveniently, my mum also doesn’t have to work Saturday, so she’s venturing out my way and we’re going to get some mani/pedis. Normally, I do my own nails every week (right now, they’re OPI’s Who The Shrek Are You? And, yes, they are Shrek-coloured), but it will be nice to let someone do them for me.

Doing something for myself is so important, even though I’m feeling more like my old self. I find it really easy to go not be so hard on myself when I’m feeling down or exhausted or in the midst of a flare. It’s so much harder to cut myself the same slack when I’m doing ok. But thanks to an awesome Christmas present from my dad (thank goodness for Spa Finder gift certificates), I can make sure I do just that.

chronic holidays

The holidays are a great time of year: gathering with family, eating good food, spending time with friends. Still, they can be rough on those of us with chronic illness. Gathering with family can be stressful, with fights, tension and potentially seeing people you wish you weren’t related to. Too much eating can lead to weight gain or eating food triggers or stuff you wouldn’t normally touch. All of it can mean pushing yourself passed your limits. It can be a disaster.

There are some things that I’ve learned through 13 years of having a chronic illness. A lot of the same things that apply during the rest of the years help during the holidays. Limit your stress as much as possible. I know that can be hard with traveling, seeing relatives with whom you may not get along and demands on your energy when you may not have all that much to give. But keeping everything in perspective is essential. Maybe you don’t go to every holiday party to which you’re invited. Maybe you let other people cook the big show-stopper dishes. Maybe you plan in naps during all-day family affairs.

Eating as well as possible is so critical, too. I know it’s tempting to have two or three helpings of all that deliciousness, plus a few slices of pumpkin pie for dessert. Bad idea. The way I (try to) prevent overeating is I only allow myself one plate. Whatever I can fit on that plate, I can take. No seconds. But I’m sure there are lots of other ways to keep from eating too much.

But, really, all the holiday tips in the world boil down to one thing: Take care of yourself. It’s not worth working yourself into a frenzy and hit every holiday high note only to be flattened for days or weeks afterward. My advice? Do as much as you can. No more. The holidays are no less special if you spend a few evenings basking in the glow of a Christmas tree, listening to carols on Last.fm and sipping on hot apple cider or (soy) egg nog.

no place like home for the holidays

One of the houses I grew up in.

After we got married, the Professor and I set up an arrangement: One year, we’ll spend Christmas with his family, and the next year we’ll spend it with mine. Sure, there are some inequities; since we live near his family, we see them every  (American) Thanksgiving, and we never go up to see my relatives for (real Canadian) Thanksgiving.

This year, of course, is our year to go up to Canada to see my family, and for awhile, it looked like we might not be able to go. We can’t afford plane tickets (and I’m not really a fan of the TSA’s new full-body scanners or the groping new pat-down techniques), and there’s just no way I was going to be able to sit for 14 hours in our fuel efficient, yet incredibly uncomfortable Honda Civic.

Then, Mum and Dad came through for us: They’re going to rent one of those giant, 15-person vans, so I can have an entire seat to myself and lay down, to make the trek. Instead of our usual one-day, no stopping marathon sprint, we’ll make the drive up to my grandparents’ house in a leisurely two.  And $200 or so later (thanks, extra fees for applying for a U.S. passport for the first time!), I will (hopefully) be good to go. And, you know, come back.

I’m still a bit nervous, though. It will still be a long time in a vehicle for someone who gets stiff and painful after 30 minutes. It’s still going to be my dad behind the wheel, and I have horrendous memories of trips to Myrtle Beach when I was a small child and being unable to stop for pee breaks until my brother or I started crying. (Mum says he’s mellowed. I guess I’ll find out.) And, if I can’t get in to see my doctor in time, who knows where I’ll be pain-wise.

Even so, I’m super, ridiculously excited. I haven’t seen my dad’s family since Christmas 2008 and my mum’s family since before that. So, merry Christmas to me! Even if I end up stuck in bed for a week, it will still be worth it.

it’s looking like a limb torn off or altogether taken apart

It’s been a rough … well, I’m not exactly sure how long, but it’s been awhile.

I’m in the kind of slow decline into a flare where each day is just ever-so-slightly worse than the one preceding it. But since the increments are so small that I don’t realise it until I’m thinking back to last week or last month and it hits me that I felt so much better, then.

It hit me this morning when my mum called while I was getting for work. After just saying, “Hi, mum. … I’m doing alright, and you?” she asked if I was sure I was doing OK because I sounded “sad.” Well, dang, Mum, I guess I am a bit sad.

I know I have no real cause for complaint; despite my illnesses, I have a pretty awesome life. I feel like a jerk for adding a “but”—but there is one, after all. I guess it’s just a piling on of little things: a long and exhausting flare, a job I don’t love, medications that don’t work and a host of other insignificant details that, taken together, just feel like too much right now.

I know everyone feels this way at some point and that those of us with chronic illness are perhaps more likely than the average Joe to feel like it never ends, but that doesn’t make it easier to deal with. I know the steps I should be taking to try to make things better. I just need to buck up and get to it.

Today, it feels like that’s easier said than done.

what’s for dinner

So, I decided to try the Mexican chopped salad with crunchy tortilla strips Jen of Jen Loves Kev posted on her blog awhile back.

It. Was. AWESOME.

There is a ton of chopping and prep work involved, so it’s not a meal to take on if your hands are hurting. But the outcome is delicious. I used fresh sweet white corn that I chopped off the cob, and it really made the salad. I doubled the amount of dressing made, and if there’s any left over, it will make an amazing marinade later in the week. Tim put some chicken he’d made up earlier in the week and some goat cheese crumbles and he said it tasted really yummy as a non-vegetarian salad that way.

Anyway, here’s the recipe:

Tortilla strips

1 t canola oil

3 6-inch tortillas (I used whole wheat ones, and they were delish)

chili powder

salt

Salad dressing

1/2 cup olive oil

2 cloves garlic

2 t cumin

2 t coriander

1 t sugar

1 t salt

1/3 cup lime juice

1/4 cup chopped green onions

1/4 cup cilantro leaves

pinch cayenne pepper (I just used more chili powder)

Salad

Romaine & spinach (I just used spinach)

2 medium tomatoes, chopped

1 avocado, sliced (I used two because I love avocado)

3 celery stalks, sliced (I left this out by accident. Oops!)

1 cucumber, diced

1 cup corn (I used about four cobs, minus a handful that I just ate)

1/2 cup cooked pinto beans

1/2 cup cooked black beans

1 red pepper, sliced

1/3 cup red onion, sliced (I didn’t feel like cutting red onion, so I cut up the rest of the green ones.)

Prep

1. To make the tortilla strips: Preheat oven to 350*. Brush the tortillas with the canola oil. Cut in half, then into 1/4-inch strips. (I used a pizza roller for this, and it was super easy.) Spread on a baking sheet and sprinkle with salt and chili powder. Bake for 10 to 15 minutes.

2. To make dressing: Heat olive oil, cumin, coriander, garlic, salt and sugar in a saucepan on low heat for two to three minutes. Blend remaining ingredients with oil mixture in a blender or food processor until smooth.

3. Combine everything and toss the salad with the dressing.

And that’s it!

It was super tasty and pretty easy, too. I’m super excited about the leftovers I get to bring to work tomorrow (as you can see).

Nom nom nom, indeed.

I’m noticing now that I’ve made the jump back into being a vegetarian that I’m cooking more — and enjoying cooking, too. I like seeking out recipes that appeal to me, sure, but I’m also on the lookout for those that I could easily turn into a non-vegetarian dish for the mister. It’s an interesting challenge, but I’m definitely liking it.

So, I would love to hear your vegetarian recipes! What have you found works and what doesn’t?

yes, but…

Thanks, Twitter, for allowing me to stumble upon this lovely gem by Christine Miserandino.

I am fighting against some of this myself. One of my bosses wants me to do something I have been expressly, well, not forbidden, but strongly advised (by medical personnel) not too do. Apparently, when the boss feels too busy, what’s best for my health is no longer a priority. I feel like I have to remind the boss that I may not look it, but I have a chronic condition. My health is more important than a silly company preference that the boss could just as easily procure.

As always, my goal is to feel well enough again to wear heels for an entire day, all day, all week. I haven’t been able to to that for awhile, and my NP always notices when I show up wearing flats. I’d love to be able to surprise her by strutting in in heels one day. I’m not there yet, but I’m hoping I’ll get there.

We’ll see.

esther has a good point

I was reading my friend bEsther’s blog about “the deceitfulness of wealth.” She was saying — I think — that one can never have enough money, that there will always be something to worry about.

And isn’t that the truth.

Tim and I were worried about money, so I decided to take another job, this one part time.  So we have more money coming in. That should’ve solved our problems, right?

Wrong.

We still worry about it. It’s like what we spend expands somehow to fill up all the money we earn. When we had no money, when Tim wasn’t working (much) and I only had one job (with a reduced salary at that), we were cheap to the point of being stingy: no spending any unnecessary money. At all. But once we both got jobs and more hours, it’s as if all our resolve, all our good spending habits, all our remembering that there are things we’d rather have than a new pair of shorts or a cute dress, all of that went out the window. Compared to what we’d had before, the “wealth” we had now seemed almost endless.

I think that’s a symptom of a bigger problem, of never really being satisfied with what we have or where we are or what we can get. (We as in everyone, not just Tim and I). I think it may be time to try something new: being content with what we have. I know we’re looking so hard at the future — when I only have to work one job, when Tim has a job he finds fulfilling, when Tim has full-time work — and so hard at where we’ve been and what we’ve had to go through that we’re not thinking about right now and how to enjoy it, even if we can’t eat out a lot or go see movies or go shopping.

There’s plenty we can do: go to the dog park with the pup, walk the gardens and state parks in the area, have a picnic outside. We have so much, something that can be hard to keep track of with recession, illness and negativity vying for attention. I’m trying to be positive. Good thing optimism isn’t a salable commodity; I can get that for free.